Thursday, 3 April 2014

UK TICK- BORNE DISEASES SYMPOSIUM

Excellent news to share, arranged is a Tick-Borne Disease Symposium taking place on 7th, June, 2014, in London.

The Speakers will be seven USA TBD Specialists, all of whom have over 20 years experience in dealing with these insidious infections. The purpose of this meeting is to discuss, with interested UK Doctors, Vets and their Researchers, testing, diagnosis, treatment, and the consequences to patients and healthcare providers of missing or not recognising the symptoms early.

A situation that is fairly unique and very important, is that in most specialties, the treating doctor will have had no personal health experience of the illness he/she  is treating, whereas in the case of TBD infections  the visiting  American doctors have either had a personal brush with Lyme Disease etc or, have family members who have been afflicted. 

There is a lot of interest in this symposium from Senior Doctors etc, possibly due to the fact that many patients whose symptoms have been missed or misdiagnosed are encroaching on clinics for Neurology, Cardiology, Ophthalmology, Endocrinology, Rheumatology and Chronic Pain.

The warnings have been around for many years regarding long term damage to human and animal health with regards to Tick-Borne Diseases. Can our health authorities really afford to continue with the misconception that Ticks and the diseases they harbour are a 'rare and regional' problem, I think not. 

Education is the key to the most difficult of situations, and it certainly is to this one. 


Friday, 28 February 2014

NHS SPECIALIST LYME DISEASE CLINICS IN UK

I was concerned over the funding of the specialist Lyme Disease clinic in Winchester which opened only a few months ago so I e mailed Dr Christine McCartney PHE.


                                                                  Public Health England
                                                                  Rare and Imported Pathogens
                                                                  Porton Down Salisbury
                                                                  Wilts
                                                                  SP4 0JG
                                                                  Tim.brooks@phe.gov.uk
                                                                   01980612774/612400
Ms J Drayson
Guildford
Surrey
25th February 2014

Dear Ms Drayson

PHE support for a Lyme clinic 


Dr McCartney has asked me to reply to your letter about support from Public Health England for a Lyme disease clinic at Winchester or another location.

I appreciate your concern that a clinic should be available on the South of England to cater for the needs of patients with Lyme and related illnesses, and indeed our intention is to support such a clinic as Dr McCartney stated at the Lyme Open Day. PHE is not a direct health service provider as clinical service provision is the responsibility of the NHS, and so any clinic has to be held under their auspices. We therefore have to partner with a suitable hospital Trust who are both willing to provide the service and who can offer the necessary facilities, staffing resilience to meet the demand within reasonable waiting times and ensure continuity of service, and clinical governance arrangements to ensure the service operates to the highest possible standards. To date the service has been provided by Winchester, funded through the normal NHS mechanisms for referral patients, and supported by PHE through provision of the extended range of tests without charge.

PHE are working to establish a permanent home for the clinic in a major NHS centre in the South of England, ideally with access to and participation from an academic infectious diseases group to support the clinical studies we believe are required to examine the diagnosis and management of Lyme disease and related illnesses in the UK and Europe. By hosting the clinic in a major centre we can facilitate access to the latest diagnostic support systems for management and research, ranging from MRI scanners to clinical immunology. As Lyme disease and similar conditions have protean manifestations and affect many systems in the body, it is important to be able to involve specialists in rheumatology, neurology, dermatology, cardiology, infectious diseases and other disciplines to offer the most comprehensive service.

An academic centre also allows us to involve the Clinical Research Network to support clinical studies in both General Practice as well as hospital cases.
A definitive system for caring for sufferers from Lyme and similar diseases has to include access for patients from the whole of the UK. To achieve this, we have to work with other major centres to establish common investigation pathways, case definitions, treatment regimens and protocols to record and share clinical data so that we can identify those therapies that work, and promulgate best practice. Therefore, we are also approaching centres in London and the rest of England to form a network of service providers within the NHS to meet the demand, and will liaise with colleagues in Scotland about arrangements for NHS Scotland.

Clearly this is going to take some time to set up. In the meantime, we will continue to support Winchester, subject to that Trust agreeing, in providing a service for Lyme patients and in ensuring continuity of care until the permanent solution is operational. Finally, the National Institute of Health Research recently awarded funds to a number of universities to work with PHE as Health Protection Research Units.

One of the programmes included in the Emerging Diseases unit award was on Lyme Disease. Although this is a relatively small programme, it is the basis on which a comprehensive study of Lyme Disease in the UK can be launched.

I hope this answers your concerns, but you will understand that we have a number of complex negotiations to undertake that will take time, and by their very nature will have to be confidential until agreements are signed.

Yours sincerely


Dr Tim Brooks
Clinical Services Director
Rare & Imported Pathogens Laboratory
Public Health England
Porton Down
Salisbury
Wilts
SP4 0JG
Copy: Countess of Mar
Christine McCartney
Matthew Dryden
George Stafford

Clearly any specialist centre will only be as good as the open mindedness of it's doctors and their willingness to consider empirical treatment until more accurate testing is available, these doctors will learn from following their patients over time and following the emerging science on this complex disease.

I remain hopeful, this is an enormous step forward from the drawer full of replies I have had from the Health Protection agency and Dept of Health in the past seven years.

Saturday, 25 January 2014

LYME DISEASE - LAW, SCIENCE, SEX, NEWS, POLITICS, COLLABORATION

This post is a round up of several news items in no particular order:-

From ILADS Facebook page link 

CASE #09-CV-1039MCA GLIBOWSKI VS. U.S. OFFICE OF PERSONNEL MGMT. History was made, and has set a precedent, for all Lyme disease patients in a lawsuit, in which attorney, William L'Esperance, a longtime part of the Lyme Disease United Coalition, has won a case where the Office of Professional Management (OPM), on the side of the insurance company, has been overruled. The Lyme disease patient, in the lawsuit, submitted bills for hundreds of medical services, treatments, and tests. The court ruled that the Lyme disease patient wins the case without regard to the medical necessity of the patient; or whether the medical treatments or tests were medically necessary or experimental or investigative. The case is GLIBOWSKI VS. US OFFICE OF PERSONNEL MGMT., 09-CV-1039MCA (US DISTRICT COURT, DISTRICT OF NEW MEXICO). The case is sealed. However, attorney William L'Esperance has filed the case and outcome with the United States Federal Courts to set precedence to aid all Lyme disease patients in lawsuits against their insurance companies, and OPM, for not covering the ILADS guidelines or Dr. Burrascano's guidelines in treatment of Lyme disease. What does this mean to each of us? 1. The door has opened for Lyme-treating doctors to accept insurance -- once all is established in U.S. Federal Court. (I will keep you posted about the advance of this outcome.) 2. You may now sue your insurance company for past bills not covered or reimbursed by insurance. The OPM cannot hold you back -- in other words, the IDSA'S guidelines are no longer accepted. To contact our hero, attorney Bill L'Esperance, e-mail: walesperance@wwdb.org William L'Esperance, Counselor at Law P.O. Box 90668 Albuquerque, NM 87199 __________________________________________________________________________________________ William L'Esperance does not want to take on new clients. He is willing to be a resource for out-or-state attorneys handling similar cases.



Resurgence of Persisting Non-Cultivable Borrelia burgdorferi following Antibiotic Treatment in Mice Plosone link 

'The agent of Lyme borreliosis, Borrelia burgdorferi, evades host immunity and establishes persistent infections in its varied mammalian hosts. This persistent biology may pose challenges to effective antibiotic treatment.'
I posted an interesting presentation from Stephen Barthold previously here

Lyme Disease May Be Sexually Transmitted, Study Suggests
This study was an International collaboration link  

“Our findings will change the way Lyme disease is viewed by doctors and patients,” said Marianne Middelveen, lead author of the study presented in Carmel.

“It explains why the disease is more common than one would think if only ticks were involved in transmission.”
“The presence of the Lyme spirochete in genital secretions and identical strains in married couples strongly suggests that sexual transmission of the disease occurs,” said Dr. Mayne.

“We don’t yet understand why women with Lyme disease have consistently positive vaginal secretions, whilst semen samples are more variable.

Obviously there is more work to be done here.” Dr. Stricker pointed to the unknown risks of contracting Lyme disease raised by the study.

“There is always some risk of getting Lyme disease from a tickbite in the woods,” he said. “But there may be a bigger risk of getting Lyme disease in the bedroom.”

Interesting comments re above study from Dr MacDonald on Lymenet Europe forum link
'These observations re-open for disusssion and critique the "sexul transmsiison" burgdorferi borrelia pathways in the human host and presumably in mammalian hosts in general. These observations constitute yet another "biological amplification " pathway for borrelia transmission, independent of Tick Salivary vehicles or hypostomes in the human dermis. The linkage of lichen sclerosus to burgdorferi borrelia infections by Eisendle, and colleagues, established the cognitive framework for urine containing borrelia to possibly directly traverse female Vulvar skin to establish a chronic Borrelia dermatosis [Lichen Sclerosus}


Latest News - Lyme Disease Action  link 

The latest one
On December 16th LDA had a meeting at the Department of Health. The purpose was to use cases documented through LDA’s help desk to highlight to the Department the shortcomings in the current provision of care for Lyme disease patients Read more under News on LDA website link

News from Canada  link

3. Elizabeth May (Green): Bill to create a national Lyme disease strategy (C-442) The Green Party leader is asking for public health officials, researchers and patient advocates to come together and develop a national strategy for diagnosing and treating Lyme disease – a tick-borne disease that can be cured with antibiotics but which can cause severe damage to the heart and nervous system if not treated. “At least for those MPs representing regions of Southern Canada, we hear from constituents suffering from Lyme disease all too frequently,” May wrote on her website this fall. “Many are unaware that the tick bite could lead to permanent disability if not diagnosed correctly and treated promptly. We need to do more.”



There are so many tragic and sad stories that our Health Authorities are not aware of, this is just one of the many sufferers Elizabeth link 

Elizabeth put out a cry for help to source medication that was no longer available for her. Through an International collaboration on Facebook the Lyme community came up with several ways to source the needed medication and was able to pass that information on to one of Elizabeth's helpers.

Together science, patient support and advocacy is moving the agenda forward and making our Health Authorities around the World look at the evidence. The science will not always be denied and the patients will not all lie back when they find treatments that help them.

Tuesday, 14 January 2014

HEALCLICK - PATIENT POWER


Our Story in 2 Minutes from HealClick on Vimeo.

Today is the launch of HealClick, a website matching patients with similar conditions so they can share relevant treatments and experiences. Above is a 2-minute video illustration of who they are and what they're doing:


I have been visiting Internet sites now over the last 10 years since becoming ill and having many different diagnosis. It is clear to me that patients are becoming much better informed and sharing information and research that they can discuss with their doctors in order to find the best treatments to help themselves. No longer must we suffer in silence depending on the sole opinions  and experiences of one doctor, there is so much more available that might help us. 


This sounds to be a very promising website where patients can share information and maybe it may help to lead to better research projects. 

Patients do seem to be leading the way over treatments and research agendas in some of these little understood illnesses - just the few that I have been diagnosed with Fibromyalgia, ME/CFS, Musculo skeletal disease, Polymyalgia Rheumatica and finally Lyme disease (which once treated for, on long courses of antibiotics improved my health), all have overlapping symptoms which are also found in many other diseases.


Sign up at www.HealClick.com 

Help us grow at  http://www.indiegogo.com/projects/revolutionizing-patient-sharing/
Below is a summary of Healclick's aims. 

- HealClick is completely free and will always be. 
- We are a site created for patients by patients. Our co-founders tried to find a site that filled their needs for social support and medical information sharing. After they couldn't find what they were looking for they decided to just make it themselves. 
- Our site is for patients only. We don't recruit Doctors or researchers because we want to hear directly from patients about what works for them and what doesn't. 
- Matching is what sets us apart. Our site gives you a percentage match to every other member. This way you know at a glance how similar you are with regards to your diagnosis, symptoms, and even treatments. 
- Start any kind of topic. If you have a question or an experience to share, we want to hear it. 
- Review any type of treatment. Tell us about your experience, and compare your results with others.
- Our site offers unique social support. The founders, writers, and community managers are all patients.We foster a positive and caring atmosphere where people can share lighthearted humor and successes as well as support each other through hard times and setbacks. 
- The medical information that our members provide won't go to waste; it will be used to fuel new research! We will share the anonymized data with researchers that we believe have patients best interests in mind. More information on how we de-identify data here: http://www.hhs.gov/ocr/privacy/hipaa/understanding/coveredentities/De-identification/guidance.html 
- Privacy is incredibly important to us. Not just with regards to data for research, but with the entire site. Usernames, pictures, and profiles will never be made available to the public. 

HealClick www.healclick.com 

Patient power, what a difference it made to the AIDS communities in the early 1980's and that was without the resources we have today on the Internet. I look forward to following the development of this new website Healclick.

Monday, 9 December 2013

TICK BORNE DISEASES - DOES YOUR DOCTOR KNOW HOW TO TREAT YOU?



Dr Joseph Jemsek discusses the Physician Training Program offered by 

International Lyme and Associated Diseases Society (ILADS)

 http://www.ilads.org/lyme_programs/lyme_training.html

From ILADS website facts on Lyme Disease :-

NO ACCURATE TESTS

THERE ARE NO TESTS AVAILABLE TO PROVE THAT THE ORGANISM IS ERADICATED OR THAT THE PATIENT IS CURED.

FEWER THAN 50% OF PATIENTS WITH LYME DISEASE RECALL A TICK BITE.

FEWER THAN 50% OF PATIENTS WITH LYME DISEASE RECALL ANY RASH.

THE ELISA SCREENING TEST IS UNRELIABLE. The common Elisa test you receive at your doctor's office misses 35% of culture proven Lyme disease. Some studies indicate up to 50% of the patients tested for Lyme disease receive false negative results.

UP TO 50% OF TICKS IN LYME-ENDEMIC AREAS ARE INFECTED. The onset of Lyme disease symptoms can be easily mistaken for other illnesses. Once symptoms are more evident the disease may have already entered the central nervous system, and could be hard to cure.

40% OF LYME PATIENTS END UP WITH LONG TERM HEALTH PROBLEMS. The average patient sees 5 doctors over nearly 2 years before being diagnosed.

SHORT TREATMENT COURSES HAVE RESULTED IN UPWARDS OF A
40% RELAPSE RATE, ESPECIALLY IF TREATMENT IS DELAYED.

There has never been a study demonstrating that 30 days of antibiotic treatment cures chronic Lyme disease. However there is much documentation demonstrating that short courses of antibiotic treatment fail to eradicate the Lyme spirochete. -

See more at: http://www.ilads.org/campaign/lyme-campaign-quickfacts.php#sthash.d7PrP86H.dpuf

Sunday, 17 November 2013

'MIKOVITS' DISEASE' - COMPETENT XMRV'S THROUGH RECOMBINATION!

Well this is an interesting piece of research - here 

 2013 Nov;87(21):11525-37. doi: 10.1128/JVI.01787-13. Epub 2013 Aug 21.

Generation of multiple replication-competent retroviruses through recombination between PreXMRV-1 and PreXMRV-2.

Source

Viral Mutation Section.

Abstract

We previously identified two novel endogenous murine leukemia virus proviruses, PreXMRV-1 and PreXMRV-2, and showed that they most likely recombined during xenograft passaging of a human prostate tumor in mice to generate xenotropic murine leukemia virus-related virus (XMRV). To determine the recombination potential of PreXMRV-1 and PreXMRV-2, we examined the generation of replication-competent retroviruses (RCRs) over time in a cell culture system. We observed that either virus alone was noninfectious and the RNA transcripts of the viruses were undetectable in the blood and spleen of nude mice that carry them. To determine their potential to generate RCRs through recombination, we transfected PreXMRV-1 and PreXMRV-2 into 293T cells and used the virus produced to infect fresh cells; the presence of reverse transcriptase activity at 10 days postinfection indicated the presence of RCRs. Population sequencing of proviral DNA indicated that all RCRs contained the gag and 5' half of pol from PreXMRV-2 and the long terminal repeat, 3' half of pol (including integrase), and env from PreXMRV-1. All crossovers were within sequences of at least 9 identical nucleotides, and crossovers within each of two selected recombination zones of 415 nucleotides (nt) in the 5' untranslated region and 982 nt in pol were required to generate RCRs. A recombinant with the same genotype as XMRV was not detected, and our analysis indicates that the probability of generating an identical RCR is vanishingly small. In addition, the studies indicate that the process of RCR formation is primarily driven by selection for viable cis and trans elements from the parental proviruses.

I have posted some time ago about XMRV here

Friday, 8 November 2013

PROBLEMS WITH CDC DEFINING LYME DISEASE

A Short Historical Perspective of Lyme Disease in America
 
By
 
Thomas Grier

 Below is a short extract from this article written by Tom Grier to read the full article go to Betty G's post on MD Junction forum here 

'Dr. Ed Masters tried in earnest to get the Lyme experts and the CDC to open their eyes and their minds to see that there was a problem with the current definition of Lyme disease.

Later Dr. Masters also insisted there was a problem with curing his patients with just two weeks of oral antibiotics.

By this time he and other clinicians were throwing everything they had at this disease including intravenous drugs like Rocephin and Vancomycin only to find that patients were often refractory or relapsing months later.

Dr. Masters was diligent in his approach to this disease and in addition to trying to document the tick bites, culture the bacteria and collect patient histories he went one step further.

He saved patient’s blood samples, CSF samples, and skin biopsies, and he also had the patients save the same samples at their own homes in their own freezers. This turned out later to prove to be a wise decision.

Dr. Master’s troubles with the local health department continued for years and culminated in the seizure of hundreds of his “Lyme-patient’s” blood samples and skin biopsies from his office freezer containing patient’s frozen samples.
These seized samples were promptly and without explanation taken by the state and destroyed.

As with other Lyme rebels and mavericks who insisted on taking a pathology perspective about Lyme disease rather than a serology based perspective, Dr. Masters treated Lyme disease aggressively and against the recommended protocols that was used and advocated by Yale Medical and the Infectious Disease Society of America IDSA.

It seemed just a matter of time until he would somehow be sanctioned and silenced, but then Ed Master’s patients stepped forward.

Ed Masters insisted that all of his patients save duplicates of the samples that he stored in his office. The patients would keep them at their own homes.
What was more important was that all patients signed a paper that said the samples were stored in his office were the property of his patients and no one else. That was the legal loop hole that quieted the barking dogs.

No one accepted the patients owned the samples, not even the state of Missouri and taking those samples without their permission and destroying them was a violation of patient’s rights and an invasion of their medical records.

When those patients went to the health department and requested the return of these samples; mysteriously and inexplicably all interest by the Health Department in re-educating Dr. Masters on how to diagnose and treat Lyme patients in Missouri vanished.

Unfortunately Ed masters died at age 63 in 2009 from complications of diabetes. His lectures will be missed both for the insight and humor that Dr. Masters seamlessly wove into all aspects of his life.

Dr. Ed Master’s biggest contribution to Lyme disease will be the understanding that Lyme is not a stand-alone disease, nor a static disease that does not change.

Like its relations that cause Relapsing Fevers, the Lyme spirochete is prone to change, adapt, migrate, and survive.

Twenty years before it was accepted, Dr. Masters suggested that the migration of birds spread ticks north and south but in 1995 this was not accepted.

Now we know that many of those migrating bird species not only harbor several species of ticks, but also are host reservoirs for Borrelia burgdorferi.'

_________________________________________________


The steps these pioneering doctors have gone to to protect themselves from Health Authorities with their own agenda!

I have posted lectures by Tom Grier in the right hand column of this blog all very enlightening reading.

It begs the question to what lengths our new UK NHS Lyme clinic along with Porton Down will be going to to help the patients.